The death of a child is tragic, and no parent wants to consider the unthinkable. When a loved one passes, their legacy can be the gift of hope to those who continue to struggle with CDKL5 and to future generations. Organ donation is a critical part of CDKL5 research and we honor the generous and selfless act of those who choose this path after a loved one has died.
The International Foundation for CDKL5 Research is collaborating with the International Rett Syndrome Foundation and the Harvard Brain Bank in order to allow autopsy samples to be safely stored for future investigation. While we hope and pray this never needs to be utilized, the time to consider this option is before you ever have to.
Harvard Brain Bank